Get Living Without's FREE Recipe of the Week
Delicious allergy-friendly recipes for you and your family
Aug/Sep 2011 Issue
Tell Me More
For additional information about advocacy and efforts to effect change, check out these organizations.
From Emotions to Advocacy by Pam & Peter Wright fetaweb.com wrightslaw.com
- AllergyMoms.com and Education & Advocacy Solutions
- American Celiac Disease Alliance
- Asthma and Allergy Foundation of America
- Celiac Disease Foundation
- Celiac Sprue Association
- Childrens Hospital Boston, Celiac Family Health Education
- Food Allergy & Anaphylaxis Network (FAAN)
- Food Allergy Initiative
- Gluten Intolerance Group of North America
- From Emotions to Advocacy by Pam & Peter Wright
Steps to a Safer School
Empowerment, advocacy and how to change the world
Parents of children with special dietary needs quickly learn the meaning of the word “advocacy,” although they may never call it that. When my son started preschool two years ago, I called it survival.
Because my child has multiple food allergies, including one that can cause anaphylaxis, I had many issues to address with the school to ensure that he had a safe year. What kind of food would be in the classroom? Where would they seat him during snack to make sure he was safe yet not isolated? How would field trips operate? And a hundred other details. Sometimes I had to be pushy. Sometimes the school’s strategies were already in place. In all these instances, I was engaging in advocacy. Anyone who has a child with celiac disease, food allergies or other special needs learns these skills out of necessity.
By definition, advocacy is speaking, writing or acting in favor of an issue. The beauty of becoming adept at advocacy is that advocacy skills can be applied across the board. You can advocate for your child in one specific, isolated situation and you can use these same skills to positively impact an entire school, community, state and even the nation.
Learning how to advocate effectively not only brings about meaningful change, it can also help you—and your child—become more confident and empowered.
School and daycare settings are often the first place that parents encounter the need to speak up for change. For many of us, it’s the first time our children will spend significant amounts of time out of our care, with strangers meeting their needs. This can cause a great deal of anxiety.
“When my daughter started kindergarten, there wasn’t snack time and I felt like we dodged the bullet. It was really first grade when we realized we were going to have to do a lot more than we thought,” says Thanita Glancey, an Illinois mom of two children with life-threatening allergies. “It’s really about the amount of effort you can put in. How much you advocate for your child is how safe your child will be.”
While each youngster is an individual with different needs, there are common steps for advocating that work in schools, daycare, gyms, camps, activity centers and a variety of other settings.
It’s always better to be proactive than reactive, so identifying safety concerns in advance is important. Start by walking through the established schedule and thinking about areas that might pose a difficulty with your child’s condition. Snack and lunch times are likely the first to come to mind but they aren’t the only ones.
Does the organization allow parents to send treats for birthdays? What celebrations will occur and do they involve food? Is food used for learning activities, such as counting games? Are foods and supplies containing your child’s allergens used in arts and crafts projects? Are there field trips planned? Will your child ride the bus? If your child requires medications, where will they be stored and who has access to them? Who is trained to administer them and do they have written permission to do so?
Make a list of your concerns and prioritize them. For each one, think about three things: your ideal solution, a reasonably acceptable solution and your non-negotiable bottom line.
Understand your resources.
The next step is to become familiar with procedures that have already been created. Find out if the school or childcare organization has policies to handle dietary concerns and related special needs. Check to see what guidelines exist at the district, county or even statewide level. Knowing your rights gives you powerful grounds in negotiation. Also, ask your child’s doctor for suggested accommodations and obtain a signed letter specifying these recommendations.
Find your allies.
Because your child will be out of your care, it’s critically important to form a supportive team. These are the people who will enforce agreements, watch your child on a daily basis and keep you apprised of potential challenges.
“At school, I always work with the principal, the teachers and the school nurse,” says Eleanor Garrow-Majka, vice president of education and outreach for the Food Allergy & Anaphylaxis Network (FAAN) and mother of a 7 year old with life-threatening food allergies. “I want to make sure my son is safe in every classroom and in the lunchroom. I need to be certain that everyone is educated and very aware.”
Glancey says of her school experience, “I talked to the principal ahead of time, as well as the assistant principal and teachers. It wasn’t just the classroom teachers but also the “specials”—the gym teacher, art teacher, music teacher. I introduced my daughter and let them meet her face to face, so they could really get to know her.”
Compile a list of all the adults who will be in contact with your child during the day, from the bus drivers and teaching staff to lunchroom workers and volunteers. Think about other adults, such as parents of children with similar needs, who can also be your allies.
Before your child enters the school, make an appointment with the staff you’ve identified to discuss concerns and to negotiate safe systems. Enter the conversation with the mindset and the stated goal that these discussions are aimed at helping keep your child safe. People may have different strategies but everyone’s overall goal is the same. Be respectful, be open to alternate solutions, stand firm on your non-negotiable issues and say thank you. Expect the best and most people will work with you.
“You can be assertive with very high expectations but you can also be understanding and kind at the same time,” says Gina Clowes, founder of AllergyMoms.com and founding member of the Food Allergy Initiative’s advocacy steering committee. “We almost always get what we need if we do it nicely.”
Get it in writing.
A written document about your child’s care and condition is useful in any setting where your youngster is under the care of another. Even with the best of intentions, agreements that are not put in writing may be forgotten or misinterpreted. Parents should be familiar with the two legal documents most commonly used in schools: Section 504 and Individual Health Care Plans (IHP or IHCP).
Section 504 is a federal law created to protect the rights of individuals with special needs and to ensure that they receive equal and appropriate services from federally funded programs. A Section 504 plan is a legal document that delineates an organization’s obligations regarding accommodations. The child must meet particular requirements in order to qualify. An IHP may contain similar conditions but doesn’t carry the same legal weight.
In either case, the written plan should describe the health condition, symptoms, medications needed and specific accommodations that are agreed upon and a plan for emergencies. A parent may advocate for detailed accommodations, such as requiring all children to wash hands when arriving at school and after snack or lunch, banning certain foods from the classroom, allowing a child to self-carry medication (in states where this is permitted), label-checking art supplies and even outlining procedures for cleaning computer keyboards. The plan should include the child’s photo and it should be given to every caregiver who might be in contact with your child during the day.
People have varying opinions about these documents. Clowes of AllergyMoms.com is a fierce supporter of 504 plans, while Garrow-Majka of FAAN believes that an IHP is a reasonable solution, especially when a school district or county has management guidelines already in place. It depends on a parent’s personal comfort level. In any case, put agreements in writing.
Involve your child. It’s important to teach your child self-protection. Ensure that your child understands his or her health condition and basic safety skills. Your child should know that food and supply labels and ingredients need to be checked. Reinforce rules about not sharing food and about hand washing. Teach your child to talk about his or her food allergy or sensitivity with friends and to always feel comfortable asking adults questions regarding safety and in reporting symptoms or accidental exposures.
Involving your child in additional advocacy really depends on the child. Give him or her permission to decide the extent to which he or she wants to be engaged. Some children may feel self-conscious while others may feel empowered by the experience.
Ready, Set, Advocate!
As people learn advocacy skills, they often discover they want to effect larger change, such as creating guidelines for district or county school systems or supporting efforts to increase research funding or educating the broader community. Some common activities that parent advocates become involved in include:
Letters and phone calls. Gina Clowes was involved in a very successful letter-writing campaign in her home state of Pennsylvania. A group of parents lobbied then U.S. Congressman John Murtha (D-PA) for funding for food allergy research. Parents and other relatives, as well as the children themselves, wrote letters.
“The siblings, especially some of the older siblings, wrote these tearful, beautiful letters about how they worried about their brother or sister, how they had watched the ambulance drive away after a reaction,” Clowes says. As a result, Congressman Murtha spearheaded efforts to allocate several million dollars for research.
“That’s the power of a local support group. We don’t know what the tipping point was but we know that collectively it was just writing letters,” she says.
Meeting with lawmakers. Chris Weiss, FAAN’s vice president of advocacy and government relations, tracks successful efforts at policy change. He accompanied members of an Illinois support group to a meeting with Illinois state representative Tom Cross.
“We met with him for about half an hour. They talked about what it was like having a child with a food allergy and told him why there was a need for statewide guidelines. He was sympathetic and agreed to help,” says Weiss. “It was just a group of parents who came together and reached out to their state lawmaker—and it worked!”
As a result, Illinois implemented statewide food allergy guidelines in schools last year.
Whether it’s an advocacy day, a fundraising gala or a training workshop, becoming part of a community effort is important in two ways: it communicates a critical mass of interest in the issue and it gives participants a sense of community and support.
There may be Celiac Awareness Month or Food Allergy Awareness Week events in your state. There may be a fundraising walk or run. Consider signing up for an event in which your child can also take part, like FAAN’s annual Kids Congress on Capitol Hill. Offer to organize an assembly for your child’s school, church or other community group.
The best advocates are those who are most informed. Continue to learn by attending conferences and trainings and joining advocacy organizations. Whenever you can, bring others with you and share information. Many parents send research studies to school staff to reinforce the need for safety accommodations and to promote awareness. Encouraging childcare workers to attend conferences, where they can interact with families facing these health concerns, can help secure their cooperation and understanding.
Learning advocacy skills helps parents feel more empowered and less controlled by their child’s special needs. As they work to ensure their child’s safety, they are heightening community awareness and contributing positively to the world.
When parents become advocates, they discover that they’re not alone. Most importantly, they model important truths for their children: that safety accommodations are a basic right and that kids with food allergies and sensitivities can—and should—live healthy, productive and uninhibited lives in a community of caring.
“It’s heartwarming to watch parents who never considered themselves assertive or maybe even articulate learn to speak up and make changes because they need to advocate for their child,” says Clowes with enthusiasm. “The experience changes everyone for the better.” LW
Freelance writer Katrina Ávila Munichiello lives in the Boston area with her husband and three children.